To IVIG or not to IVIG, that is the question?

I’m off to hospital tomorrow to see my dermatologist and neurologist (two for the price of one with dermatomyositis). During the discussions about where I’m at, I need to talk about using IVIG (intravenous immunoglobulin) as an alternative to methotrexate. This was brought up with me last week during my stay in hospital as I’m having quite a few side effects from the steroids and methotrexate and I suppose, they are hoping that IVIG will be a quicker and more effective control for the disease.

But…I just feel a but ‘funny’ about the whole thing. I think it might be a combination of factors, one of which being, that each bottle of immunoglobulin is made from the antibodies of 20,000 people. Now…I don’t know about you, but that sort of freaks me out. The thought of 20,000 other persons, ‘little bits’, floating about inside me feels just weird. Rationally, I know I’m being silly. Im a trained scientist for gods’* sake! But it feels weird, I’m telling you: A little bit yeurgh.

Then there’s that damned cannula. Please no more needles and cannulas!

Last week when they took that awful thing out, I bleed for ages, all over the place. My trousers were covered in blood.

Oh, but funny story. I had put those bloody trousers in my suitcase to come home and when I got back and opened the suitcase, the dog immediately jumped in and went into a state of crazed madness dragging the blood stained trousers out of the bag, shaking them and trying to lick the blood off: You’ve got to love dogs for their carefree attitude towards personal cleanliness.

Since taking my weekly Methotrexate on Sunday evening, I have been quite poorly. Nauseated, diarrhoea, weakness and extreme tiredness, headaches and any pain seems to be amplified. IVIG doesn’t come without side effects and they seem to be similar to those caused by methotrexate. I suppose the difference is that the treatment with IVIG is over a shorter period. If I stick with methotrexate we are talking at least another 2 years of taking the drug.

So, I am left with the question, IVIG or not IVIG?

I’ll let you know after tomorrows meeting…

* I purposely have used a small g and the apostrophe in this place, so as not to offend christians and to take into account the fact that some religions have multiple gods.

§ 7 Responses to To IVIG or not to IVIG, that is the question?

Sus, I’m supposed to start IVIG this Thursday (pending insurance approval, *rolls eyes*). I too am very disturbed by the idea of 20,000 people’s “other bits” floating about inside of me. Especially since I’ve been to the plasma donation center and have seen a large group of these people :/

But, if it can replace the meds one day, I suppose it may be worth it? Ugh, damned if you do, damned if you don’t!

Too bad they can’t find a way to do it without poking you and causing a bloodbath again!!<3 Have a great day friend!

OMG Nichole, the images that you have just put into my head are scary – you never think you’ll end up having to make these decisions do you, sigh. I still feel unwell today after the evil meth so I am more and more thnking, just do it Susan – just wish it could magically get into me. Good luck Thursday Nichole, let me know how it goes please <3 xxxx

I figured since you put the lovely visions in my head this morning, I would return the favor! That’s what Myo sisters are for. I’ll let you know and hopefully I have good news to report, but it’s different for everybody, so if it doesn’t work out for me there’s a chance it will for you!<3

I was always sick with methotrexate. I took it on Thursday, felt like dirt while working on Friday but the rest of my weekend was okay. The MTX finally failed and I relapsed into a severe vasculitis flare. I was changed to Imuran and it’s much better now. So far, so good.

Did you wind up getting the IVIG? Just wondering if that helped with you getting strong enough to return to work. I was working before i got sick and have three beautiful children that I took to there activities/volunteered at the activities etc. I don’t care if I ever go back to work. I would just like to be able to function “predictably” each day to take care of my kids/family. Cook, clean, be there for their activities. But this disease makes me feel horrible every 20 min. And the attack moves from place to place in my body, my head and sinuses are dried out and pulsating, to my muscles burning and twitching, to my skin and scalp itching—all in am instant. The outdoors seems to assault me. I have no energy at all. Dry mouth and eyes. Swallow problems, chest heaviness… The list goes on and on!!!

Its an awful disease, dermatomyositis, because it is systemic. Having children through this though, must be just awful, Im lucky, my daughter is grown up and is a great support to me. The thought of having to look after children whilst having this disease is shocking, i don’t knowhow you cope! You said you were on 20mg of steroid and now on methotrexate – same as me, it worked for me, in that it has got my disease under control (more or less, I still have ‘strange days’). It took around 7 months to get about 60% ‘normal’ then a further 3 months to get to the point where I was feeling more or less 90% of wat I had been – although, im not sure I’ll ever be back to ‘normal’, as many people with dermatomyositis say, this is a new normal. Much look and good health to you xx